MND sufferer discusses being given ‘nine months to live’
A “historic” £2million investment in the UK’s “biggest ever” clinical drug trial for motor neurone disease may help finally identify a cure.
The “pioneering” MND-SMART trial aims to speed up the search for new and effective medicines that can stop, slow or reverse the progression of neurodegenerative disorders.
Charity MND Scotland said it has also entered into a partnership with the MND Association of England, Wales and Northern Ireland, which is committing £500,000 more, pushing the investment figure to £2.5million.
Terminal illness MND stops signals from the brain reaching the muscles.
It can cause people to lose the ability to walk, talk, eat, drink and eventually breathe unaided.
Average life expectancy is just 18 months following a diagnosis and no cure or effective treatment has been found yet.
Rugby legend Doddie Weir fought the disease for six years while campaigning for research breakthroughs and died last November aged 52.
Dr Jane Haley, of MND Scotland, said the charity is “delighted” to be facilitating innovation, adding: “This is the largest single research investment MND Scotland has ever made.
“It will help drive the next phase of this pioneering trial, ensuring equitable access to a clinical trial for people with MND.
“None of this would be possible if not for our incredible fundraisers, volunteers and donors. Together, we will make time count.”
MND Scotland is the foundational funder of the trial, which started recruiting in February 2020, after the charity first invested £1.5million.
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Multiple drug treatments will be tested at the same time to speed up progress and cut the number of participants put in a “placebo” group.
“Repurposed” drugs – already approved to treat other conditions – are being tested first and the trial, in conjunction with the NHS, is due to run non-stop for years to come.
Based at the University of Edinburgh’s Euan MacDonald Centre for MND Research, the trial is open to the vast majority of people living with MND in Britain.
Professor Suvankar Pal, MND-SMART co-lead, said: “This has already transformed the MND clinical trial landscape in the UK.
“So far, more than 500 people with MND across Scotland and the rest of the UK have given up their time to take part in this vital research to identify potential new treatments.
“I’d like to thank each and every one of them, as well as the team of researchers and clinicians who continue to make this important research happen.”
- Potential trial participants can visit www.mnd-smart.org for more information.
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